The Race Is On

"I really, really, really want to die and have had enough of being so sick and in so much pain every second of every day and, basically, one serious health crisis after another," wrote Lynn Gilderdale in a 2006 Web post during one of many discussions the 31-year-old British woman had with parents and friends on whether to hasten her own death.

In July 2009, Gilderdale decided to act, injecting herself with what she believed to be a lethal quantity of morphine. An hour later, she was unconscious but still alive, so her mother, Kay, took over the duty of assisting her daughter's suicide. She crushed antidepressants and sedatives and inserted the powder into her daughter's nasogastric tube. When that remedy failed, Kay gave Lynn several more injections of morphine, and later, increasingly desperate, several injections of air. Finally, toward dawn, Lynn's spirit made good her longed-for escape from a body ravaged for 17 years by severe chronic fatigue syndrome (CFS).

Judith Mikovits, Whittemore Peterson Institute

The Gilderdales' personal tragedy became a public story following Kay Gilderdale's arrest for attempted murder. With the British government inching toward legalizing assisted suicide, Lynn's CFS-related loss of almost every physical function, coupled with her mother's steadfast devotion, rendered the Gilderdales the most sympathetic in a series of highly publicized right-to-die cases.

In January, a British jury unanimously found Kay Gilderdale not guilty of attempted murder. Her exoneration marked a triumph for advocates of the legalization of assisted suicide. But lost in that debate was what patients with CFS view as a more urgent story: The disease that took Lynn Gilderdale's life remains as untreatable in 2010 as it was when the first known outbreak occurred in Lake Tahoe in 1984.

Cort Johnson, CFS Patient, Activist, and Blogger

"CFS simply gets no respect. It has been underfunded, understudied, underdiagnosed, and the healthcare system would like nothing better than to sweep it under the rug," says Donnica Moore, a women's health expert and CFS advocate. "But we're not going to allow that."